Hey honey,
I had checked a few times to see how you were getting on but missed your previous post to todays! Sorry!!
Good to see you have room to manouvre on the levels front and also in some respects its good that your doc is warey as it means he wont be gung ho as many are and will take YOU into account. So think of it in that way even though sometimes it can be frustrating.
On the mask front my thoughts to you are this...
Firstly, with crohns our immune system is overactive and thats why we take immunosuppressants.
Secondly, unlike other patients that are immunosuppressed who start with a normal level of immune system like the transplant patients I work with we have a heightened level as I mentioned above.
Thirdly, as a result of this heightened immune level what we are really aiming for is a more "normal" to " slightly lower" level of immune response. This then means that our crohns settles and stops attacking our gut.
Does this make sense so far??
As a result we arent necessarily as immunosuppressed as many perhaps think we are.
Yes we use immunosuppressant drugs, yes we can be possibly more wide open to colds, flu etc etc and I freely acknowledge you have had infections before.
This doesnt mean you will get every single bug and germ out there however even on the triple therapy.
I take remicade 6 weekly and methotrexate weekly along with a years worth of pred which I just finished. Yes I had infection problems but mine tend to be down to my gut flaring or my asthma leaving me so wheezy that I head for infection because I dont have good air entry, or a boil/abcess that becomes infected.
I dont actually pick up colds, flu etc. I do have flu vaccines like most folk and I do take precautions at work i.e if I need to wear a mask at work to suction a patients airway when they are on life support and I dont work with TB patients.
I could pick up infection anywhere just like you honey but I dont go to the length of wearing a mask.
Something alot of folks arent aware of is that most masks (unless they have a special filter in them and we only use them for aerosol meds we have to give to patients what could cause us to inhale and drop our blood pressure dramatically) only protect you for up to a max of a couple of minutes. The reason for this is as you exhale you exhale water vapour and that in turn wets the mask and as you breathe in again the bugs that have now got stuck on the wet mask are in turn inhaled by you at a higher density than if you wore no mask at all. As a result wearing a mask that you see many in other countries wearing can actually increase your risk not lessen it. Does that make any sense at all?? So yes I can see your friend thats a nurse is concerned about you and is thinking along the right lines. We have had all sorts of questions asked of our microbiology team like yours and more and they have done an overview for staff, patients and visitors.
This is why folk are asked to catch any sneezes or coughs in tissues and bin them immediately and wash their hands well so they are disposed of and not spread around their skin by reuse or kept on their hands etc to pass onto someone else.
The choice is yours Lauralee if you feel you need to wear a mask to protect you and you would "feel" you are doing something to protect yourself but you can see from what I have said above that I wont be wearing one unless I am in an isolation room with a patient with swine flu and have our specialist masks with a filter and only for short periods of time. We also have to be tested to ensure they fit snuggly and dont move away from our face no matter what they do and they are not made of paper or cotton like you see on the TV.
Very few transplant patients have problems with Tacro and most are on a cocktail of meds. Sometimes it helps to take the med with food or at night to lessen nausea for instance or to change to a different manufacturer. Yes they can be open to infection BUT keep in mind what I said at the outset about the difference between them and us ok? I totally understand why you feel as you do about wearing a mask in public too and its yet another thing to have to cope with in many ways and more so when you have had to readjust body image with already with your stoma ((hugs)). You have coped marvelously Lauralee so far. Just take it one step at a time as you are doing, you are doing well!
It is important to do your blood tests as you are so you keep an eye on the areas they want to monitor so you are at optimum dose for you and your body without taking more than you need. Also keep in mind my previous post about the different angles the Tacro and humira go from so your body isnt being hammered in one specific area (even though both work on suppressing the immune system) constantly.
The pred also acts in a different way. For may folk pred actually increases white blood cells that fight infection as well as take over the work of the adrenal glands by replacing the natural cortisol with a higher level of synthetic cortisol (which is why its important to have a plan to decrease pred so your adrenal glands gradually take over the work themselves again). The action that pred is prescribed for is to reduce inflammation but they dont actually know the detail on how it does that. So if your blood tests have shown an increase in white blood cells it may not be infection it could just be a response to the pred and thats why its important to be monitored by a doctor so they can assess you and ensure it isnt infection just the pred response.
Good to see you are managing and that they are looking at decreasing the pred too. Hope what I have said helps and isnt too rambly either.
Hang in there honey. Thinking of you as always ((hugs))
! This is all making me very nervous for the obvious reasons and because of all of my previous reactions to meds. My med list is very very long! (apprx. 17 meds) I don't know if this is just the norm or if I am completely over medicated? Any info that anyone might have would be GREAT!
